THE PACHYDERM IN THE VESTIBULE

The Pachyderm in the vestibule

Regular readers (Both of you) will attest to my healthy disdain for superstition and pseudo-scientific knowledge in place of hard fact. Not only that, but my steadfast and unbreakable determination to grab the bull by its whatsits, avoid all sorts of squeamishness and lily-livered cowardice when it comes to writing about feelings and suchlike.

As my old great grandmother used to say

There’s no fool like an old bird in the hand when it comes to beating it about the bush.

Now, I feel I should offer some sort of explanation for the almost year long hiatus. It all started with a bump. A bump on the head. A quite sizeable bump it has to be said. I was falling a lot at the time; legs just washing out in front if me and down I’d go. I usually though some sort of instictive reaction for self preservation, managed to avoid head injury, praise the Lord.

Yep. Nothing more serious than a trip to local A and E .The top and bottom of it was I was booked into Queen Square for a second insertion in July 2017. It was always on the cards that I would have a fresh insertion at some point, when I felt that I was getting no more from the original DBS (Deep Brain Stimualion) set up as it was. And so it was.This time, they used the Boston Scientific hardware a new generation of kit, which allows the ends of each electrode to be moved to focus the therapy and means it is much more accurate.

The surgery itself was…. ‘uneventful’ I think is the correct term.

And then spent the next month in hospital. And do you know what? It seems to onl y to have worked beyond my wildest dreams!

and now, bizarrely,I find myself increasingly reluctant to talk about it for fear of’Jinxing it’. (I know ). So, i will just collect my stuff, my lucky rabbits foot. My four leaf clover and stick my head down for a little while.

Monday, monday

I have thought long and hard ( 5 minutes) about posting this tale; particularly as it is one of the stated aims of this blog that it should not become a dull repository of all things Parkinson. But there are lessons to be learned – especially for me and maybe others as well.

Above all, it shows us how fleeting everything is, and how our lives can be changed completely within seconds for no rhyme or reason.

It is what it is.

Before I begin, a brief look at some of the terms used, which are pretty essential in understanding how People with Parkinsons (PWP) lead their lives (Apologies I if you already know this. It is tiresome, but not very long)

Dopamine:

The substance produed by the brain which acts as chemical messenger and allows movement to take place. By the time of diagnosis PWP will have lost about 60% of these Dopamine-producing cells .

Leva-Dopa

A synthetic form of the chemical which will cross the blood/brain barrier. Dopamine itself will not do this. Great at restoring movement, but at a price; as the body gets used to the Leva –Dopa, the more it needs , and as doses are increased very unwelcome side effects kick in.

Deep Brain Stimulation (DBS)

This is when an electrical current is passed from a battery implanted in the chest via cables into the skull into two electrodes, implanted into the brain. The current is adusted to give therapeutic results. I had this done in 2011. It is not cure but in many patients it is seen to ameliorate the symptoms.

‘Off ‘

When the leva-Dopa medication or not working. Example. Protein inhibits its absorption. So it may not work after a protein-rich meal.

‘ON’

When PWP have relatively good movement, either because of drug therapy , DBS or a mixture of the two.

Here we go. Monday morning I was getting ready for my 9:30 am weekly Yoga class. It is a five minute walk from my front door. I was alone, everyone had gone to work and I was sitting on the bottom stair, leaning forward tying up the laces on my trainers when I heard an electronic ‘beep’ sound.

I recognised it as the on/off switch of my DBS handset. The handset is about the size of a small mobile phone and allows me to make fine alterations to the amplitude of the DBS settings . I knew immediately what I had done. In the leaning forward motion I had inadvertantly caused the handset, which I always carry in my tracksuit pocket, to swich off.

So now I am getting no deep brain stimulation. Immediately my hands start shaking uncontrollably I am very ‘Off.’ I try and remain calm, noting as I do so that my mobile is in sight but not reach and my medication is in my yoga bag; again within sight and reach, but as good as on the other side of the world to my shaking hands.

It is so difficult to describe the helplessness and frustration. A simple task like putting your hand into your pocket becomes impossible. Nevertheless, after about ten minutes, I manage to get the handset out. I just need to lift it up so I can see. I am trying to keep my hands steady. It is no good, I drop the handset onto the floor somewhere beneath me. My strength is failing. My last Leva-Dopa tablet was at 0:90am. I wonder when it kicks in if it will be enough to propel me to sit up and get the handset. I wait for the familiar sensation of the drug doing its work. Eventually, I can feel it but my condition is so advanced that the tablet barely scratches the surface. It is about 11:00am Time to plan. The chances of my getting help rely on my getting the attention of the postman (who usually comes about 12:30) Of course he doesn’t show his face today. Typical. The amount of shit we get through our door…

It looks like I’m in for the long haul. It will be 5:30/6:00 before my wife gets home. Will I last? I’ve got no option! I spend the afternoon trying to keep wake ( I don’t want to miss someone calling at the door) and periodically shifting my legs to keep my circulation going. My body has slumped, so that I am now lying wedged on the bottom step, the step edge itself under the back of my neck. I am still wearing my jacket and one foot trainer on; the other foot, trainer half off.

My hands in particular are aching due to the constant shaking. My head is arching back at the neck, and feels like it is taking all the pressure from my legs. My fingers are starting to twist. My mouth is dry and I have no swallow.

I listen hopefully for the sound of a vehicle reversing into the drive.

5:45 she arrives. I have planned what to say the moment she gets in the door. My voice is weak, but I have enough of it left to explain what has happened and direct her to the DBS handset.

She switches it on. Bliss! I drop down to the floor and lay on my front.The relief is unbeliveable. I top up with medication. It takes about 15 minutes for this to work and I completely switch ‘on’.

I spend half an hour shaking and rubbing out the cramps (it takes about a week for the aches and pains to ease off)

Over eight hours stuck on the stairs. Nothing I could have done about it. But there was. You see I had got complacent, I had turned off The ‘Panic Alarm’ which is linked to a twenty four hour care centre. It had which had been false-alarming recently. Had that been swtched on I would have been out of my predicament in minutes rather than hours.

I know.

A perfect storm.

A perfect shit storm.

© Andy Daly 2016

 

Playing Doctors and Nurses

Here’s a great little game to play if you find yourself in Hospital, or visiting someone who is.

Draw the curtain around the bed so that the player cannot see who is approaching. Basically it is very simple. All you need to do is listen to the footsteps of approaching hospital personnel and guess who it is:

Categories

Loud, brisk and purposeful step: Consultant.

No-nonesense pat pat. Has three speeds (fast/medium/slow) depending on the personality of the member of staff him or herself, amount of shift remaining and urgency of journey: Nurse

Lots of noisy, clattering footsteps which seem to change direction frequently. A bit like a heard of antelope: Junior Doctors and students.

Slow soft shuffle. Feet never seem to lift off the floor: Cleaner.

Squeak squeak of rubber ‘Crocs’: Anaesthetist.

Silent. Appear at your bedside without warning: Surgeon

© Andy Daly 2013

East Ward #2

Chapter 2

I have been admitted for observation. Well that’s interesting, because I don’t know where they are doing it from. Maybe from a tiny hole in the ceiling above my bed. It certainly isn’t being done as a matter of course by the nursing staff, who seem a bit bemused by my presence. In fact, I sneak a look at the ‘Observation sheets’ only to find them incomplete and incorrectly filled in. But wait: I’m getting ahead of myself here.

I have been admitted for observation by my Neurologist after spending a miserable summer fighting to adapt to a new drug: Rotigotine (or ‘Neupro’, a non-ergoline dopamine agonist formulated as a once-daily transdermal patch which provides a slow and constant supply of the drug over the course of 24 hours, for those of you who are interested in that kind of thing) For it to have any impact, I was having to wear patches the size of your average single duvet. They made me nauseous and left painful red weals on the skin, such that you weren’t supposed to use the same area of the body more than once a fortnight. Now then. Take away the head, chest, midriff, hands and feet which were also ‘no go’ areas and you’re left with? Well, you’re left with the fact that dripping wet I weigh about 9 stone (57.15kg in Euros) I didn’t have enough skin! None of which was fully appreciated by the consultant concerned as at no point during the whole pitiful saga was I examined. Indeed all our calls and correspondence to the hospital in question were fielded by another (junior) member of staff. Meanwhile, I was spending hours  a day in a near catatonic state, trying to make light of it to the kids – being as upbeat as possible (Of my waking day, more time was spent like this than with any degree of mobility.) Anyway, cut a long story short, I’ve wound up in here to ‘iron out’  the problems with my medication.

I arrive promptly on the Monday morning (A miracle! Once punctilious to the point of obsession, these days it’s a case of  ‘Give me a window of about 3 days and I’ll see what I can do…’) I find my way to the ward via main desk and lifts and am shown to a bed.

Sometime later – I have lost track of time and dozed off I think, a waspish Filipino Ward Sister comes to take my details. This is a painful procedure as although we appear to be talking the same language, we are both hearing something quite different. That hurdle finally surmounted, I am left to my own devices – for the rest of the day. No one comes to tell me what the plan for the day was, where I should go, stay; what I should do etc….

In fact, this Ward Sister was to provide endless amusement as the week wore on, doing the pre- op checks on unwitting and skittery patients. It took me a while to decipher what she was actually saying, but it was worth the effort.

Example: heard issuing from behind curtains on my second morning –

“Okay, you okay? I take your details … You gadanny medalinyabaddy?’

‘Excuse me?’

‘Medal? You gadanny medalinyabaddy?’

‘I’m sorry, I don’t …’

‘Any medal inside, before?’

(Have you got any metal in your body? ie. implants, plates, screws etc)

‘You gottadrawen? …. Your harm … ‘You gottadrawen?

‘What??’

(Have they – the surgeons – done a drawing (ie made a mark to indicate which) on your arm?)

Priceless was the look of complete incomprehension on patients’ faces as, interrogation over, the curtains were drawn back and once more they joined fellow inmates …

… who were to include the Junkie, who first woke me up in the early hours of my second day.

© Andy Daly  2010

East Ward #1

Chapter One

It is 1:15 am. The sublime sound of Phyllis Hyman’s ‘You know how to love me’  fills my head as I lose myself to its pumping beat and intoxicating rhythm. Through my half open eyes I can see a myriad lights sway and swim. Feeling the cool floor beneath my feet, I dance like there will be no tomorrow. Where? The Gardening Club, Covent Garden? Deep Funk at madame JoJo’s? The Wag? I stop and take a swig from a bottle of water. The lights in question are those of West London. I can see them all the way out to Heathrow, for I am high up on the tenth floor.

Welcome to East Ward, the Neurology/Surgical Assessment Unit, at a well-known (No, I’m not going to name it!) London Hospital. My ‘dance floor’ is otherwise known as the ‘Day Room’. I am the only patient who seems to use it during the day, largely because I cannot bear the company of my fellow inmates, ‘Jock the Junkie’ and ‘Captain Birdseye’ who arrived during my first night and second morning here, respectively. As a consequence of a painful hour spent here with the pair of them earlier in the week, I now blag the Day Room for my own exclusive use in the evenings by removing the batteries from its TV remote control after first selecting channel 5. Jock and the Captain soon tire and this leaves me a good three hours to watch TV and try to ‘shake off’ the maddening diskynesias; the uncontrollable, jerky movements characteristic of long-term Leva-Dopa use by those with Parkinson’s. Leva-Dopa (or L-Dopa as it is sometimes known) is prescribed to replace the missing Dopamine: the Brain’s chemical ‘messenger’. A very effective drug, it is unfortunately notoriously difficult to get  to reach its target, as the body, in addition to any protein at loose in the system, will quickly break it down. My Neurologist once compared it to putting rocket fuel in a car. Diskynesias happen when there is a surplus, which ends up sloshing around the central nervous system, causing the body and limbs to go here and there. Somehow I  found that dancing (in an embarrassing ‘all-action’ wedding-Dad style) to Disco, Soul, Funk and Punk helps a bit to soak it up.

And so here I am. 1:30am. I’d better get a move-on and clear off. The nurses have first shout on the room from 1:30 am onwards. As from then, each night, there is a certain amount of furniture-moving goes on – It seems, to prevent entry as they bed down inside to sleep or otherwise – I’m not sure; I don’t really wish to know; waking me as they leave at about 4 am.

Of course by then, I am safely tucked up in bed in my room with Jock, the Captain and his ‘minder’. The ward is organised into a series of small rooms or bays, some are general purpose, like this one; others high dependency. The bays are identified by letter.

It goes without saying that I am on E-Bay.

© Andy Daly  2010